Things I do when I'm sick

(and some things I do when I'm well, too)

Same old news from me; I’m flaring up. I’m not sure why but there’s a horrible bouquet of possible reasons. It might be because it’s the bad week of my cycle, or because the seasons are changing. Because I’m sleeping badly (too much one night then not enough the next), eating too many takeaways, exercising too much, staring at a screen without breaks, I don’t know. Maybe all of the above. Maybe something else I don’t know about yet. That’s the joy of chronic conditions; you base your entire life around avoiding triggers and then flare ups happen anyway. It’s best to let go of any semblance of control completely, but I’m not that kind of person.

All I know is for the last few weeks, I’ve felt my energy depleting and my pain increasing. It started with a few bad, bedbound days but I found it easy to shake them off because there was so much joy to be found in the in-betweens. Spring arriving! Italian food with my boyfriend, walking out west and talking about the old versions of ourselves. A night spent around my friends’s kitchen table, playing card games and talking about the same shit we always do. Life-affirming hangover the next morning. Homemade pesto. Spending the morning in bed writing. Afternoon sun coming through the windows of the Shawlands co-op. Tennis with my best friend; we still aren’t good but we’re getting better. Talking endlessly about the novel. A couple of walks around the park with the dog, noticing the crocuses and daffodils. These moments of sweetness were even sweeter than usual because I could feel the flare up coming and I was trying to outrun it, like I always do. I never learn but the cycle stays the same: the moments of reprieve become fewer and farther between. I start cancelling plans, making bargains. I stop exercising, start paying for expending too much energy. My life gets small. Medication. I give into it. Migraines, vomiting, relentless cramps, whatever. Changing from one pyjama set to another and sitting down in the shower. Tired all the time but restless still. Longing for outside but closing my curtains against the light.

It’s funny (not really) how much knowledge you accumulate from being chronically ill for a long time, how familiar the routines become. Being sick gently erodes you, like a rock by the sea, until you become a whole new shape. A different person than you would have been. Now, I think in lists. Of symptoms, of medications that worked, of medications that didn’t, of things to do when I’m better. I buy two packets of painkillers every-time I’m near a shop because I’ve taken eight a day for the last decade. I go cold whenever I walk past a hospital, I freeze up in the x-ray machine at the dentist because it makes me think of MRIs. Whenever I speak to a doctor, I spent the whole time with my fists clenched. There’s a whole new language I’ve learned to speak with medical professionals: never mentioning google, trying to advocate without aggression, always trying to be a good girl and good patient; hoping to be rewarded with care. I’m constantly apologising for even being there, for needing help.

I try to hit a specific tone when I’m texting to cancel plans: honest enough that they don’t think I’m flaking but breezy enough so as to not illicit pity, because I hate pity more than anything. I make constant decisions under the influence of pain; whether to shower or clean, to work or exercise, to wake up or go back to sleep. Things that help: sweets, weed, cold showers, caffeine and kool n soothe. Things that don’t help that I do anyway: crying, complaining, isolating. A weird side effect of being close with someone who is chronically ill is that you get to learn all these things too. Lucky for you guys! My boyfriend knows about triptans and injections and preventative vs management and hormones and barometric pressure. Usually, he’s the one buying the painkillers. He who is healthy and strong and never darkens doctor’s doors. He who spends half his life telling me that it will pass. I never believe him, even though he’s always been right before.

I come back to my writing about pain when the flare up passes and I cringe. I hit backspace until the page is clear. The vulnerability of being sick is, for me, the hardest thing to bear. I hide evidence like it’s shameful; deleting texts, changing bedsheets. Here, on Substack, I am less guarded because I still feel as if I’m writing to no-one but in my real-life, I skate over the details for the people sweet enough to ask, because I am so tired of thinking about it. When I’m in the depths of pain, I don’t feel like a person anymore, but when the flare up passes I am born again. Wide-eyed and soft-limbed. No teeth. I want to do everything all at once, twice. I feel so lucky that I find myself thanking God. Every mundanity feels holy and every small joy a miracle. I tell my friends I love them and tell my boyfriend he was right and I make big plans I might be too sick to fulfil. Eventually, things get back to normal and the shine wears off again. I go back to hanging up the washing and running for the train and never writing as much as I want to or as well as I know I can. Snapping at the people I love. Burning dinner. Pain creeping back in. Again and again and that’s life.